Saturday, March 12, 2011

The solution is underpants...

My little boy is growing up in front of my eyes. Seriously. He's tall.

He's seven and a half, and he's the height of an average 10 year old. He's slender (despite his all abiding love for hot deep fried potato products) and gangly. And as he walks along beside me, almost at shoulder height, bobbing and weaving in his skippy-hoppy walky way, I have to smile.

I smile because he's so himself. So unencumbered by social expectations and kid cool. So at one with the demands of his own being. So buoyed by forces I can only speculate about. I smile because he doesn't miss a trick, in his terms. Every train, every animal, every green car - they all rate a mention. He's giggling about Phineas and Ferb talking about toilets. He's inventing compound words (what's a mixture of yellow and black? Blellow. What's a gazelle crossed with a deer? A gazeer). He's planning the next addition to his toy collections and asking again and again (and again and again) whether we can get them.

I smile because if I didn't, some days I'd cry.

I see what other kids his age are up to. I see the sleepovers and the sporting competitions and the choirs. I see the excitement about growing up. I see the mastery of tasks not related to toys and TV shows. I see the parents sharing a wine as they roll their eyes over emerging crushes. I see the carpooling and the hastily arranged babysitting and the sudden surprise decisions to share a meal while the kids play.

I really love my life. And I really love my family. I love what we have become, and I love the way we handle ourselves - as a unit and as individuals. Most of all, I love what Billy has brought to our lives - beyond the fact that he made us parents. He made us thinkers, and feelers and adapters. He made us appreciate the good moments, and celebrate the small steps right alongside the giant leaps. He made us understand that 'bad' stuff happens all the freaking time, and we can and will endure.

As I watch him skipping along, anticipating the next moment of pure pleasure in his life, I am full of appreciation for the effect he has on us. I am certain he will go on to have a similar effect on many other people in his life. That's if some of those other people can wipe the disdainful judgement and pity off their faces when they meet him.

He can't sit still. Big deal. He walks funny. So? He repeats himself and interrupts. And your point is?

Every moment of Billy's life is lived in the same mode I'm in when I choose my underwear for the day. I'm sure as hell not looking like the chick on the swing tag, but it works for me, and the important people in my life think my choices rock.

Each day, I have to remind myself that looking 'like the other kids' is not success. Being able to be Billy is the goal. Being able to be happy and healthy and some other 'h' word I can't think of right now... that's the aim.

It's so easy to think, 'phew, today was a good day' when it's a day without too much obvious autism in it. But that can't be grounds for celebration. He is who he is. He does what he does. We do what we do. The fact that we all (sometimes) look about as subtle as testicles on a birthday cake shouldn't be a problem. We're not doing it to annoy people. Besides, Chelsea Handler gets away with that crap every day of her life.

Of course, we're all hoping for a day without meltdowns or gigantic allergy shiners or endless sacrifices to the God of Underpants. Of course, we work like very enthusiastic ants to maximise health and minimise distress. Of course, we are constantly working on goals of so many kinds that our heads spin.

We want our son to have every possible chance for happiness and fulfilment and success. That goal must be inclusive of the fact that he is autistic. Achieving that goal will come with a fair size serving of funny walks, slabs of TV show scripts and the odd collection of merchandise. It will hopefully also come with better immune function, less toxic overload and a brain that sends more reliable messages to his body. That would be awesome, and I'll work my ring off to make that possible.

But the fact that Billy will likely continue to look different, sound different, think different... that shouldn't come into our measure of success. There are reasons for that difference that we don't yet understand. We can't let anything distract us from trying to understand what those reasons are.

This is really the essence of what Billy has taught us.

Normal is a fallacy. It's a mirage. It's something we think we're heading for, without ever really knowing what it is. It taunts us as adolescents. We mimic it as we age. But our son was born without an inbuilt 'normal GPS', and it's toughened us up. We have thicker skins and bigger hearts than we did before. We have x-ray vision, supersonic hearing and a renewed passion for finding solutions and answers.

Some days, I need a reminder to wear these gifts on the outside like Superman's undies. So what if they are a little embarrassing.

Every day is a win for my kid. He climbs a mountain to achieve things that other children do without conscious thought. He manages to joke when the world hurts him with weapons that are playthings for his peers.

I don't think this is a question of embracing neurodiversity or not. I think it's a question of focus.

I'm not aiming for my kid to be normal. I'm aiming for my kid to be capable. I'm aiming to be able to leave this world without the fear that my son will be a natural target. I'm aiming for a world where he's able to make choices for himself, without instant judgement or misinterpretation.

And this requires the world to meet him half way - to open their minds and their hearts in the same way we, and so many other parents have done.

Perhaps it would also help if we all wore our undies on the outside more often. Just so Billy can have the odd smirk at the 'normal' folk in the same way they smirk at him.


Suz said...

Oh, I so needed to read this post this week. Thankyou thankyou thankyou. Beautiful Billy, just as he is xx

fiona2107 said...

love,love,LOVED this post!
Thank you Valerie :)

Pam said...

So nice to have you express this SO well! Billy sounds awesome. Found you through Hopeful Parents and looking forward to reading more.

Rebekah said...

i proudly don my testicle hat (or at least faux-proudly) every time i take the little j out on the town. might as well. and, he's given me a tremendous amount of things to be proud of lately. specofically, his balls are encased in undies instead of a pull-up, i'll wear that on my head any day of the week.

Dana Meijler said...

Thank you so much for this post Valerie, it was just a beautiful read. I wish I could express myself that eloquently. Yeah for Billy and all that he does. We must absolutely realize that our kids on the spectrum move mountains every single day.

Dearna said...

Can anyone tell me if the right hand side of Vals blog is cut off your screens?The words just vanish on mine like they are hiding under the border and I suck at guessing what they are 9although it does keep me busy)??

K- floortime lite mama said...

how I adore this post !!!
Have you listened to Aimee Mullins on Ted Talk
My favorite quote from her talk alludes to something you mentioned here
"Perhaps the existing model of only looking at what is broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself.. I think the greatest adversity that we've created for ourselves is this idea of normalcy. Who's normal? There is no normal. There's common. There's typical"